References

Amdur, Robert, Speers, Marjorie A., and Bankert, Elizabeth. IRB Triage of Projects that Involve Medical Record Review. In press.

Applebaum, Paul S. Threats to the Confidentiality of Medical Records—No Place to Hide. JAMA. 2000 Feb 9; 283(6):795–796.

Association of American Medical Colleges. AAMC Comments on The Recommendations of the Secretary of Health and Human Services on the “Confidentiality of Individually Identifiable Health Information.” AAMC Testimony Presented to the Senate Labor and Human Resources Committee. 1997 Nov 10.

Belmont 1979. The Belmont Report. Office of the Secretary. Ethical Principles and Guidelines for the Protection of Human Subjects of Research. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1979 April.

Bradburn, Norman M. Population—Based Survey Research. Presentation Done at National Bioethics Advisory Commission. 2000 Apr 6.

Brands, Stefan. Rethinking public key infrastructures and digital certificates—building in privacy. Thesis of Stefan Brands. 1999 Sep 4:304 pages .

Buckovich, Suzy A., Rippen, Helga E., and Rozen, Michael J. Driving Toward Guiding Principles: A Goal for Privacy, Confidentiality, and Security of Health Information. Journal of American Medical Informatics Association. 1999 Mar–1999 Apr 30; 6(2):123–133 .

Department of Health and Human Services, and Office of the Secretary. Standards for Privacy of Individually Identifiable Health Information; Proposed Rule. Federal Register. 1999 Nov 3; 64(212): 59918.

Dietz, Lawrence. Information Warfare Poses New Threats: Are You Ready? Internet Security Advisor. 2000 Mar–2000 Apr. 30:8–10.

Etzioni, Amitai. Medical Records Enhancing Privacy, Preserving the Common Good. Hastings Center Report. 1999 Mar–1999 Apr 30:14–23.

GHPP (Health Privacy Working Group). Best Principles for Health Privacy. Health Privacy Project; Institute for Health Care Research and Policy , Georgetown University. 1999. Available [online] http://www.healthprivacy.org/latest/Best_Principles_Report.pdf.

Goldman, Janlori, and Hudson, Zoe. A Health Privacy Primer for Consumers EXPOSED. Health Privacy Project. Institute for Health Care Research and Policy. Georgetown University. Washington, DC. 1999 Dec. Available [online] http://www.healthprivacy.org/resources/exposed.pdf.



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Institutional Review Boards and Health Services Research Data Privacy: A Workshop Summary References Amdur, Robert, Speers, Marjorie A., and Bankert, Elizabeth. IRB Triage of Projects that Involve Medical Record Review. In press. Applebaum, Paul S. Threats to the Confidentiality of Medical Records—No Place to Hide. JAMA. 2000 Feb 9; 283(6):795–796. Association of American Medical Colleges. AAMC Comments on The Recommendations of the Secretary of Health and Human Services on the “Confidentiality of Individually Identifiable Health Information.” AAMC Testimony Presented to the Senate Labor and Human Resources Committee. 1997 Nov 10. Belmont 1979. The Belmont Report. Office of the Secretary. Ethical Principles and Guidelines for the Protection of Human Subjects of Research. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1979 April. Bradburn, Norman M. Population—Based Survey Research. Presentation Done at National Bioethics Advisory Commission. 2000 Apr 6. Brands, Stefan. Rethinking public key infrastructures and digital certificates—building in privacy. Thesis of Stefan Brands. 1999 Sep 4:304 pages . Buckovich, Suzy A., Rippen, Helga E., and Rozen, Michael J. Driving Toward Guiding Principles: A Goal for Privacy, Confidentiality, and Security of Health Information. Journal of American Medical Informatics Association. 1999 Mar–1999 Apr 30; 6(2):123–133 . Department of Health and Human Services, and Office of the Secretary. Standards for Privacy of Individually Identifiable Health Information; Proposed Rule. Federal Register. 1999 Nov 3; 64(212): 59918. Dietz, Lawrence. Information Warfare Poses New Threats: Are You Ready? Internet Security Advisor. 2000 Mar–2000 Apr. 30:8–10. Etzioni, Amitai. Medical Records Enhancing Privacy, Preserving the Common Good. Hastings Center Report. 1999 Mar–1999 Apr 30:14–23. GHPP (Health Privacy Working Group). Best Principles for Health Privacy. Health Privacy Project; Institute for Health Care Research and Policy , Georgetown University. 1999. Available [online] http://www.healthprivacy.org/latest/Best_Principles_Report.pdf. Goldman, Janlori, and Hudson, Zoe. A Health Privacy Primer for Consumers EXPOSED. Health Privacy Project. Institute for Health Care Research and Policy. Georgetown University. Washington, DC. 1999 Dec. Available [online] http://www.healthprivacy.org/resources/exposed.pdf.

OCR for page 37
Institutional Review Boards and Health Services Research Data Privacy: A Workshop Summary Gostin, Lawrence O., Lazzarini, Zita; Neslund, Verla, and Osterholm, Michael T. The Public Health Information Infrastructure A National Review of the Law on Health Information Privacy. JAMA. 1996 Jun 26; 275(24):1921–1927. IOM (Institute of Medicine). Committee on Regional Health Data Networks and Molla Donaldson, and Kathleen N. Lohr, editors. Health Data in the Information Age: Use, Disclosure, and Privacy. 1994. Washington, DC: National Academy Press. IOM (Institute of Medicine). Committee on Health Services Research: Training and Work Force Issues and Marilyn J. Field, Robert E. Tranquada and Jill C. Feasley, editors. Health Services Research: Work. Washington, DC: National Academy Press. 1995. IOM (Institute of Medicine) Committee on the Role of Institutional Review Boards in Health Services Research Data Privacy Protection . Protecting Data Privacy in Health Services Research. Forthcoming. Washington, DC: National Academy Press. ISPE (International Society for Pharmacoepidemiology). Data privacy, medical record confidentiality, and research in the interest of public health. [Web Page]. 1997 Sep 1. Available at: http://www. pharmacoepi.org/policy/privacy.htm. JHITA (Joint Healthcare Information Technology Alliance). Advocacy Paper: Medical Records Confidentiality Legislation [Web Page]. Available at: http://www.jhita.org/medical.htm. Lo, Bernard, and Alpers, Ann. Uses and Abuses of Prescription Drug Information in Pharmacy Benefits Management Programs. JAMA. 2000 Feb 9; 283(6):801–806. Lowrance, William W. Privacy and Health Research: A Report to the U.S. Secretary of Health and Human Services. 1997 May. Nelson, Andrew F., Quiter, Elaine S., and Solberg, Leif I. The State of Research Within Managed Care Plans: 1997 Survey. Health Affairs. 1998 Jan–1998 Feb; 17(1):128–138 . NRC (National Research Council). Committee on Maintaining Privacy and Security in Health Care Applications of the National Infrastructure, Computer Science and Telecommunications Board, Commission on Physical Sciences, Mathematics and Applications, and National Research Council. For the Record. Protecting Electronic Health Information. Washington, DC: National Academy Press. 1997. NRC (National Research Council) Panel of Confidentiality and Data Access, George T. Duncan, Thomas B. Jabine, and Virginia A. de Wolf, editors. Private Lives and Public Policies Confidentiality and Accessibility of Government Statistics. 1993. O'Brien, Dale G., and Yasnoff, William A. Privacy, Confidentiality, and Security in Information Systems of State Health Agencies. American Journal of Preventive Medicine. 1999; 16(4):351–358. OPRR, National Institute of Health. Intitutional Review Board (IRB) Guidebook, 1993 [Web Page]. 1993. Available at: http://grants.nih.gov/grants/oprr/irb/irb_guidebook.htm. PhRMA. PhRMA Policy Papers: Twin Goals: Privacy and Progress [Web Page]. Available at: http:// www.phrma.org/issues/goals.html. Shalala, Donna. Confidentiality of Individually Identifiable Health Information, Recommendations of the Secretary of Health and Human Services, pursuant to section 264 of the Health Insurance Portability and Accountability Act of 1996. 1997 Sep 11. Wiederhold, Gio. Traveling the Electronic Highway: Glossary Maps, Encounters, Directions . Terms relevant to Internet Computing. 1998 Jan. Wolf, Leslie E. and Lo, Bernard. Practicing Safer Research Using the Law to Protect the Confidentiality of Sensitive Research Data.